Search

Purpose Despite advances in cancer treatment, there is a prevalence of pediatric childhood cancer survivors still at risk of developing adverse disease and treatment outcomes, even after the end of treatment. The present study aimed to (1) explore how mothers and fathers assess the health-related quality of life (HRQoL) of their surviving child and (2) evaluate risk factors for poor parent-reported HRQoL in childhood cancer survivors about 2.5 years after diagnosis. Methods We assessed parent-reported HRQoL of 305 child and adolescent survivors Results In agreement with our hypotheses, our results show that fathers rate their children’s HRQoL total score as well as the condition-specific domains family (p = .013, d = 0.3), friends (p = .027, d = 0.27), and disease (p = .035, d = 0.26) higher than mothers about 2.5 years after diagnosis. Taking variance of inter-individual differences due to family affiliation into account, the mixed model regression revealed significant associations between the diagnosis of CNS tumors (p = .018, 95% CI [− 7.78, − 0.75]), an older age at diagnosis, (p = .011, 95% CI [− 0.96, − 0.12]), and non-participation in rehabilitation (p = .013, 95% CI [− 10.85, − 1.28]) with poor HRQoL in children more than 2 years after being diagnosed with cancer. Conclusion Based on the results, it is necessary for health care professionals to consider the differences in parental perceptions regarding children’s aftercare after surviving childhood cancer. High risk patients for poor HRQoL should be detected early, and families should be offered support post-cancer diagnosis to protect survivors’ HRQoL during aftercare. Further research should focus on characteristics of pediatric childhood cancer survivors and families with low participation in rehabilitation programs.

Zusammenfassung Ziele der Studie Eine Krebserkrankung im Kindesalter geht häufig mit körperlichen sowie psychosozialen Belastungen einher, die über die Behandlung hinaus bestehen können. Die familienorientierte Rehabilitation (FOR) adressiert Behandlungsfolgen und unterstützt Familien bei der Rückkehr in den Alltag. Ziele dieser Studie waren es, Reha-Ziele und Zielerreichung in der FOR abzubilden, den Zusammenhang von körperlicher Leistungsfähigkeit und körperlichem Wohlbefinden zu analysieren und Prädiktoren der Veränderung der körperlichen Leistungsfähigkeit im Verlauf der FOR zu untersuchen. Methodik Im Rahmen einer prospektiven Beobachtungsstudie wurden ärztliche Angaben zu Reha-Zielen, Zielerreichung und körperlicher Leistungsfähigkeit bei 175 Kindern ( Ergebnisse Die am häufigsten definierten Reha-Ziele sind die Steigerung der körperlichen Leistungsfähigkeit sowie die Integration in die Gleichaltrigengruppe. Insgesamt werden die Ziele bei 82 bis 100% der Kinder erreicht und die körperliche Leistungsfähigkeit erhöht sich signifikant im Verlauf der FOR. Ein signifikant positiver Zusammenhang besteht zwischen der ärztlichen Einschätzung der körperlichen Leistungsfähigkeit und der elterlichen Einschätzung des körperlichen Wohlbefindens zu Beginn der FOR. Ein weibliches Geschlecht des Patientenkindes sowie eine längere Zeit seit der Diagnosestellung sind mit einer geringeren Veränderung der körperlichen Leistungsfähigkeit assoziiert und ein höheres Ausmaß der körperlichen Folgeschäden geht mit einer größeren Veränderung einher. Schlussfolgerung Das 4-wöchige multimodale Programm der FOR adressiert verschiedene körperliche und psychosoziale Einschränkungen und geht unter anderem einher mit einer deutlichen Verbesserung der körperlichen Leistungsfähigkeit der Kinder. Die Veränderung der körperlichen Leistungsfähigkeit hängt mit verschiedenen soziodemografischen und medizinischen Faktoren zusammen (u.a. Geschlecht). Die Betrachtung dieser Einflussfaktoren könnte zu einer Optimierung der FOR beitragen.

Childhood cancer often leads to physical and psychosocial burdens that can persist beyond the end of treatment. Family-oriented rehabilitation programs (FOR) focus on long-term consequences and support families in returning to daily life. The objectives of this study were to describe rehabilitation goals and goal attainment, to analyze the relationship between physical functioning and physical well-being and to examine predictors of changes in physical functioning during the FOR.In a prospective observational study, statements of physicians regarding rehabilitation goals, goal achievement and physical functioning of 175 children (18 years of age at the time of diagnosis of leukemia or central nervous system tumor) at the beginning and the end of a FOR were analyzed. The physical well-being of the patients was assessed from a parent and child perspective. Correlation coefficients were calculated to analyze the relation between physical functioning and physical well-being. Predictors of changes in physical functioning were examined with a multiple regression analysis.The most frequently mentioned rehabilitation goals were the increase of physical functioning and the integration into the peer group. Overall, the goal achievement ranged from 82 to 100%. Physical functioning improved significantly during the FOR. A significant positive correlation between the physician's assessment of physical functioning and the parental assessment of physical well-being could be found at the beginning of the FOR. According to the regression model, female gender of the child and a longer time since diagnosis were associated with a lower change in physical functioning. Furthermore, a higher degree of physical consequential damages was associated with a larger change.The 4-week multimodal rehabilitation program of the FOR addressed various physical and psychosocial burdens and was accompanied by a significant improvement of the physical functioning of childhood cancer patients. The change in physical functioning was associated with different sociodemographic and medical factors (eg, sex). The consideration of these factors could help with optimizing the program.Eine Krebserkrankung im Kindesalter geht häufig mit körperlichen sowie psychosozialen Belastungen einher, die über die Behandlung hinaus bestehen können. Die familienorientierte Rehabilitation (FOR) adressiert Behandlungsfolgen und unterstützt Familien bei der Rückkehr in den Alltag. Ziele dieser Studie waren es, Reha-Ziele und Zielerreichung in der FOR abzubilden, den Zusammenhang von körperlicher Leistungsfähigkeit und körperlichem Wohlbefinden zu analysieren und Prädiktoren der Veränderung der körperlichen Leistungsfähigkeit im Verlauf der FOR zu untersuchen.Im Rahmen einer prospektiven Beobachtungsstudie wurden ärztliche Angaben zu Reha-Zielen, Zielerreichung und körperlicher Leistungsfähigkeit bei 175 Kindern (18 Jahre bei Diagnosestellung einer Leukämie oder eines Tumors des zentralen Nervensystems) zu Beginn und am Ende der FOR analysiert. Das körperliche Wohlbefinden der Kinder wurde aus Eltern- und Patientensicht eingeschätzt. Der Zusammenhang von körperlicher Leistungsfähigkeit und körperlichem Wohlbefinden wurde mithilfe von Korrelationskoeffizienten analysiert. Mittels einer multiplen Regressionsanalyse wurden Prädiktoren der Veränderung der körperlichen Leistungsfähigkeit untersucht.Die am häufigsten definierten Reha-Ziele sind die Steigerung der körperlichen Leistungsfähigkeit sowie die Integration in die Gleichaltrigengruppe. Insgesamt werden die Ziele bei 82 bis 100% der Kinder erreicht und die körperliche Leistungsfähigkeit erhöht sich signifikant im Verlauf der FOR. Ein signifikant positiver Zusammenhang besteht zwischen der ärztlichen Einschätzung der körperlichen Leistungsfähigkeit und der elterlichen Einschätzung des körperlichen Wohlbefindens zu Beginn der FOR. Ein weibliches Geschlecht des Patientenkindes sowie eine längere Zeit seit der Diagnosestellung sind mit einer geringeren Veränderung der körperlichen Leistungsfähigkeit assoziiert und ein höheres Ausmaß der körperlichen Folgeschäden geht mit einer größeren Veränderung einher.Das 4-wöchige multimodale Programm der FOR adressiert verschiedene körperliche und psychosoziale Einschränkungen und geht unter anderem einher mit einer deutlichen Verbesserung der körperlichen Leistungsfähigkeit der Kinder. Die Veränderung der körperlichen Leistungsfähigkeit hängt mit verschiedenen soziodemografischen und medizinischen Faktoren zusammen (u.a. Geschlecht). Die Betrachtung dieser Einflussfaktoren könnte zu einer Optimierung der FOR beitragen.

Purpose Recent research demonstrated that fear of progression (FoP) is a major burden for adult cancer survivors. However, knowledge on FoP in parents of childhood cancer survivors is scarce. This study aimed to determine the proportion of parents who show dysfunctional levels of FoP, to investigate gender differences, and to examine factors associated with FoP in mothers and fathers. Methods Five hundred sixteen parents of pediatric cancer survivors (aged 0–17 years at diagnosis of leukemia or central nervous system (CNS) tumor) were consecutively recruited after the end of intensive cancer treatment. We conducted hierarchical multiple regression analyses for mothers and fathers and integrated parent-, patient-, and family-related factors in the models. Results Significantly more mothers (54%) than fathers (41%) suffered from dysfunctional levels of FoP. Maternal FoP was significantly associated with depression, a medical coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and lower family functioning (adjusted R2 = .30, p < .001). Paternal FoP was significantly associated with a lower level of education, depression, a family coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and fewer siblings (adjusted R2 = .48, p < .001). Conclusions FoP represents a great burden for parents of pediatric cancer survivors. We identified associated factors of parental FoP. Some of these factors can be targeted by health care professionals within psychosocial interventions and others can provide an indication for an increased risk for higher levels of FoP. Implications for Cancer Survivors Psychosocial support targeting FoP in parents of childhood cancer survivors is highly indicated.

Mit steigenden Uberlebenszahlen in der Kinderonkologie in Deutschland gewannen Fragen von Lebensqualitat, medizinischer und psychosozialer Rehabilitation an Bedeutung. Deshalb wurde 1985 die Rehabilitation von krebskranken Kindern und Jugendlichen etabliert. Als weltweit einmalige Besonderheit werden erkrankte Kinder gemeinsam mit ihren Geschwistern und Eltern, also der Kernfamilie, rehabilitiert. Dies erfolgt in wenigen hochspezialisierten, von der Gesellschaft fur Padiatrische Onkologie und Hamatologie (GPOH) empfohlenen Rehazentren nach familienorientierten Rehabilitations(FOR)-Konzepten fur die Dauer von i. d. R. 4 Wochen. Dahinter steckt die Erkenntnis, dass die Krebserkrankung eines Kindes nicht nur das Kind selbst, sondern jedes einzelne Familienmitglied und die Familie als Ganzes betrifft. Um den Rehaerfolg des erkrankten Kindes zu sichern, ist es deshalb auch erforderlich, das Familiensystem zu stabilisieren und die Bedurfnisse nicht nur des Patienten, sondern auch seiner Geschwister und Eltern zu berucksichtigen. Jugendliche ab 15 Jahren werden bei entsprechender Entwicklungsreife im Kleingruppensetting innerhalb ihrer altersgemasen Peergroup rehabilitiert. Patienten im Ubergang vom Jugend- zum Erwachsenenalter werden modellhaft im Heranwachsenden-und-jungen-Erwachsenen(AYA)-Bereich der Klinik Bad Oexen abhangig von ihrer emotionalen, sozialen und kognitiven Reife und Entwicklung in speziellen Kleingruppen betreut. In der FOR besteht das unmittelbare Ziel darin, das Familiensystem zu stabilisieren, um so den Rehaerfolg des erkrankten Kindes zu sichern. In der FOR und der Reha fur AYA ist das langfristige Ziel die Ruckkehr in ein moglichst normales und selbstbestimmtes Leben. Patienten, die langfristige Erkrankungs- und Therapiefolgen erleiden und als chronisch krank anzusehen sind, brauchen langfristige und nachhaltige Unterstutzung. Hier konnen mehrere Rehabilitationszyklen sinnvoll und erforderlich sein.

The aim of the study was to investigate the effects of a 4-wk inpatient rehabilitation program on postural control and gait in pediatric patients with cancer.Eighty-eight patients with brain tumors (n = 59) and bone/soft tissue sarcomas (n = 29) were evaluated. Postural control was assessed examining the velocity of the center of pressure and single-leg stance time on a pressure distribution platform. Walk ratio, a measure of neuromotor control, was used to evaluate intervention effects on gait.Repeated measures analysis of variance showed improvements in postural control measures, indicated by a decrease in velocity of center of pressure of -0.4 cm/sec (F1,80 = 7.175, P = 0.009, ηp = 0.082) and increase in single-leg stance time (mean [median] = 1.1 [2.6] sec, respectively; F1,80 = 12.617, P = 0.001, ηp = 0.136). Walk ratio increased by 0.2 mm/steps per min (F1,82 = 3.766, P = 0.056, ηp = 0.044). Mean changes in dependent variables did not differ between both patient groups (P0.05).The results indicate benefits of an inpatient rehabilitation program comprising standard physical therapy as well as aquatic and hippo therapy on postural control and gait after treatment of pediatric patients with cancer.

Burden and Rehabilitation Goals of Families in Pediatric-oncological Rehabilitation Survival rates of childhood cancer patients increased during the past years up to 80 %. Therefore, pediatric oncological rehabilitation is essential for reintegrating children with cancer into normal life. We performed an analysis of the current state in pediatric oncological rehabilitation with regards to the impairments of the participants and results in rehabilitation. Descriptive and content analyses of 422 medical discharge summaries were conducted. 55 % of the pediatric patients are male; the average age is 8.7 years. Children attending rehabilitation program are affected by various functional and psychosocial impairments. We identified global rehabilitation-goals such as integration in peer group and specific goals such as pain relief. According to rehabilitation physicians' opinion most patients achieve their rehabilitation-goals. Accompanying family members report a range of psychosocial burden and diverse concerns for rehabilitation. Medical discharge summaries display the complexity of family-oriented rehabilitation. We conclude that rehabilitation treatment needs to be tailored according to individual burdens and the whole family.

OBJECTIVE Fear of progression (FoP), also referred to as fear of cancer recurrence, is gaining increasing interest in survivorship research as it constitutes a great burden for patients and relatives. However, only little is known about FoP in parents of childhood cancer survivors. The objective of this study was to investigate the impact of FoP on quality of life (QoL) in parental couples. METHODS We analyzed dyadic data of 197 couples parenting childhood cancer survivors (aged 0-17 years at diagnosis of leukemia or central nervous system tumor) after the end of intensive cancer treatment. The actor-partner interdependence model calculated by structural equation modelling was used to examine actor effects (effect of one's own FoP on one's own QoL) and partner effects (effect of one's own FoP on the partner's QoL). RESULTS Eighty-one percentage of the parents reported moderate or high FoP levels. Mothers reported higher FoP levels (p

ObjectivesTo investigate experiences of parents of paediatric cancer survivors in cancer-related changes in the parents’ daily life (work life, family life, partner relationship and social life) during and after intensive cancer treatment and to examine the reintegration process with its impeding and facilitating factors.DesignThe design of this cross-sectional study involves a qualitative content analysis of semistructured interviews.SettingParticipants were consecutively recruited in clinical settings throughout Germany.ParticipantsForty-nine parents (59% female) of 31 cancer survivors (aged 0–17 at diagnosis of leukaemia or central nervous system tumour) were interviewed approximately 16–24 months after the end of intensive cancer treatment (eg, chemotherapy).ResultsDuring treatment, more than 70% of parents reported difficulties reconciling paid work, household and family responsibilities and caring for the ill child. Couples spent little time with each other and approximately 25% reported dispute and burden. Many parents did not have enough energy for pursuing any hobbies during treatment. However, over the long term, being faced with the child’s disease also led to strengthened relationships, new priorities, improved communication, increased mutual trust and greater appreciation for daily life. Supportive social networks (family/friends/employers), a strong partner relationship prior to the diagnosis and the use of psychosocial services (eg, family-oriented rehabilitation) had a positive impact. At the time of the interview, most families had adapted well. However, reintegration took time and some parents lacked the energy required to continue life as they did before the diagnosis.ConclusionsEven though most parents successfully readjusted to a new ‘normality’, reintegrating into daily life after paediatric cancer treatment remains difficult. Professional psychosocial support could help families with the reintegration process. Lastly, clinical staff (eg, physicians, psychologists, social workers) should bear in mind that the burden of parents does not automatically end with the end of intensive cancer treatment.

Our objective was to further the understanding of the process of reintegration of childhood cancer patients after treatment and to identify factors influencing that process. Using a qualitative approach, we conducted 49 interviews with parents (n = 29 mothers, n = 20 fathers) from 31 families with a child (

This paper describes the function and contribution of family-oriented oncologic rehabilitation (FOR) and of oncologic rehabilitation for adolescents and young adults (AYA). The rehabilitation of children with cancer and their families and that of AYA is an integral component of pediatric oncologic treatment regimens. 32 years ago, FOR was developed in Germany and continues in a select number of highly-specialized rehabilitation centers recommended by the GPOH (Gesellschaft für Pädiatrische Onkologie und Hämatologie, Society of Pediatric Oncology and Hematology). After oncologic treatment, the patient, along with his or her family, begins an individualized rehabilitation process. The whole family participates in this process to ensure success. AYA patients are rehabilitated in small peer groups. In FOR, the immediate goal is to stabilize the family system in order to ensure maximum success for the patient. The long-term goal of FOR and AYA rehabilitation is to provide support for a return to as normal and self-determined a life as possible. Patients who suffer from chronic illnesses due to their oncologic disease and therapy (for example, a significant number of brain tumor patients) need long-term help in various areas. Here, multiple 4-week cycles of oncologic rehabilitation may be necessary throughout a patient's lifetime.

Chronic health conditions and impaired quality of life are commonly experienced in childhood cancer survivors. While rehabilitation clinics support patients in coping with the disease, studies evaluating an inpatient rehabilitation program on promoting physical activity (PA) and health-related quality of life (HRQoL) are missing. A 4-week inpatient rehabilitation program was prospectively evaluated. One hundred fifty patients with leukemia or lymphoma (N = 86), brain tumors (N = 38), and sarcomas (N = 26) were enrolled on average 17 months after cessation of acute medical treatment. PA amount and cadence (indicating the intensity of walking activity) using the StepWatch™ 3 Activity Monitor and HRQoL global and physical well-being scores using the KINDL® questionnaire were assessed before, immediately after, and 6 and 12 months following the program and analyzed using multiple linear mixed models. Significant effects on PA were only found at 12-month follow-up for amount and cadence variables (all p

Burden of Parents of Pediatric Cancer Patients in Pediatric-oncological Rehabilitation All family members experience high burden in case of paediatric cancer. Family-oriented rehabilitation (FOR) aims to improve the physical and mental situation of the families. We investigated anxiety and depression (HADS) and cancer-related burden of parents (n = 69) before and after FOR and analysed its association with quality of life of the ill children. At beginning of FOR 70 % of the parents showed moderate to high anxiety scores and 47 % moderate to high depression scores. They reported cancer-related burden such as exhaustion, cancer-related fears and a burden of family's daily life due to the cancer disease. At the end of FOR 40 % of the parents showed moderate to high anxiety scores and 30 % moderate to high depression. Cancer-related burden measured with self-developed items also decreased after FOR. Compared to age- and gender-adapted norm values, mothers show significantly higher anxiety and depression scores, whereas fathers show no differences in depression scores compared to norm values at the end of FOR. Quality of life of ill children and anxiety and depression scores in the parents are significantly associated with each other. Results of the study show that parents stabilise after FOR and improve their mental situation. However, the results also underline the need for long-term psychosocial support for all family members.

Burden and Rehabilitation Goals of Families in Pediatric-oncological Rehabilitation Survival rates of childhood cancer patients increased during the past years up to 80 %. Therefore, pediatric oncological rehabilitation is essential for reintegrating children with cancer into normal life. We performed an analysis of the current state in pediatric oncological rehabilitation with regards to the impairments of the participants and results in rehabilitation. Descriptive and content analyses of 422 medical discharge summaries were conducted. 55 % of the pediatric patients are male; the average age is 8.7 years. Children attending rehabilitation program are affected by various functional and psychosocial impairments. We identified global rehabilitation-goals such as integration in peer group and specific goals such as pain relief. According to rehabilitation physicians' opinion most patients achieve their rehabilitation-goals. Accompanying family members report a range of psychosocial burden and diverse concerns for rehabilitation. Medical discharge summaries display the complexity of family-oriented rehabilitation. We conclude that rehabilitation treatment needs to be tailored according to individual burdens and the whole family.